This IS in response to the question about what 3 things tick me off.. and, to MY friends-  I do NOT feel put-out or pissy when YOU ask how i am.  It's not like you're asking if I am eating a steak or if my jaw is fixed-- okay???

 NOW;  As much as I love some of the people here (and it is NOT those on my friends' list who do this as most know what's what).. I HATE to be asked how my jaw is healing. .Specifically;  IS IT HEALED?    I have put it out there so many times that I feel like that's all I ever "talk" about!  NO, My jaw is NOT HEALED.  It will not EVER heal in its' current state.  

Here's the deal- just one more time (for those who may have been elsewhere, etc..).. I had my old jaw-joints removed in July of 07.  The surgeon who removed them went through my EARS (something I have never seen) andl on the right side, created 3 fistulaes from the ear-canal into the joint-space-- something all of my surgeons have said THEY have never seen after jaw-surgery.  It was infected and draining fluid// pus.. from July until now.  Still, my new joints were seated on the 4th of January of this year.  No, couldn't eat much of anything other than soft or liquid for a LONG time.  Healing takes a long time from any surgery such as this.  Would you expect for anyone with a knee or hip replacement to start training for and/or running a marathon?  Nope.  And, the jaw needs using a lot more often than the knee or the hip, too.. Your jaw moves when you talk, eat, sleep, breathe... etc.. it does not stay out of motion,.

Okay-  I still had a LOT of gunk coming out of my ear, continuously, and in early April, I went up to MassGen to see the surgeon who had seated the new (beautiful) joints.  They were able to remove a full syringe of fluid from through my ear into my joint space.. along with taking multiple cultures of the outer-ear and the ear-canal.  Well, they came back as strep, staph (2 staph strains), and other enterobactors and yeast.  Still, I was sent back to Texas to "heal".. after a minor surgical procedure.  This was the 10th of April.

On the 19th (or so) of April, my head, face, and neck blew-up and I posted MANY pics of this in most of my groups so that people knew what was going on and to get advice.. Well, I ended up with a very serious form of Strep (different than what had been collected earlier).. and, I was hospitalised in Austin for a few days.  After getting out, the swelling, fever, b/p, pulse;  everything about my body got a LOT worse. and I had to have another :minor" procedure to remove about 60cc's of nasty pus.  yep-- pus.  After that, my surgeon in Boston called and asked me to  get a flight up there a.s.a.p, which.  I did schedule for the 29th of April and, on the 30th, my right jaw-joint was removed.   I was hospitalised again for a few days.

I have a severe bone-infection... OSTEOMYELITIS.. and this will prevent any "easy" sort of joint replacement in the future.  My beautiful new joint will not be used again..  I will, most likely, have to have the right side of my mandible removed..  and, I still need to have the ear-canal repaired OR I will continue to grow bad bacterium there... and this was and still could be life-threatening.  I do have (and have had it for a month so far) PICC line that goes from my left arm into my AORTA;  it delivers antibiotics to try and clear the infection, via a pump which needs to be refilled three times a week (means I need to see the doc Mon, Weds, Fri).. in order that it not kill me!  I take oral antibiotics, also, and probably need to stay on this stuff until the ear is repaired.  Well, one would think that this could be a simple proposition but, no;  the bone-cement (which I was allergic to) implanted in my joint-space eroded the ear-canal to the point that even sutures fall right out.  So, I need to see the best specialists possible and, thankfully, we do have some neuro-oto-head and neck surgeons here.  So, we are setting-up a team here (along with my infectious disease doc and my pain doc....blah blah--- who can and will also work with the team of docs I have in Boston.

So, yea;  it is a MESS; and, NO, this was never "cosmetic" surgery.  This started with me being hit by a Pepsi-truck, twenty-years ago, tomorrow.  It's been a horrendous bunch of hell and saying it is painful is not even telling you how it is!  The surgeries have been for FUNCTION.. not for looks, not for pain-control.  It's a lifetime of pain,, and that will NEVER change.  Even if I do get my right side
fixed", it will never be a pain-free proposition. 

And, this is what irritates me to no end.  Even if I know you mean the best when asking, it drives me BATTY!  Okay, for my friends, I love ya.. and hate to put-off anyone.  It's been 20 years of hell with 40 surgeries to try and fix what was broken by the pepsi-truck driver..

Hey- I edited this since I realised it could be taken badly by some of "my gals",, and this is NOT what I wanted to do, in ANY way.. ok?  I love you gals and, seriously, none of you irritate me regarding your questions.. ok?? got it?? I hope so!!

 c'est ma vie..

Add A Comment


Jun. 1, 2008 at 9:31 PM

Oh Anne!  I am so sorry that you have had to go through all this shit.  Honestly if I were you, I would talk to a lawyer.  I think you have a good case to sue either Pepsi or the first surgeon that screwed everything up or both.

I'm sending you {{{HUGS}}} and good healing vibes.

Message Friend Invite

Jun. 1, 2008 at 9:40 PM sorries. i didn't mean to bug you about it.

Message Friend Invite

Jun. 1, 2008 at 9:48 PM

Gals!  I didn't mean YOU!  I can handle the, "how's the jaw doi'" sort of thing.. it's this:

1. was this cosmetic to start/

2. are you eating steak now? (when I have been ranting on and on about not having a joint)

and 3. Are you healing or healed now?  Crap- of course NOT..

So, your questions don't bug me!  And, Beeks. Thanks so much,  I know we haven't been around each other a  lot-- and I have missed you.  I'm just not here a whole lot these days...btw:  Pepsi was sued almost 20 years ago and it was selltled about 17 years ago-  badly..  The surgeon who caused me so many problems?  I'm working on that one!

Message Friend Invite (Original Poster)

Jun. 1, 2008 at 10:20 PM Hey anne!!  Sorry so many idjits are allowed to reproduce.  I just wanted to tell ya that I have not been able to drink a Pepsi since we "met"  I feel like a traitor.  I am now a Coke gal........................Any luck on finding me the coconut flan recipe?

Message Friend Invite

Jun. 1, 2008 at 11:09 PM

This is why I love ya... cut and dry and you give it like it is. No bullshit.


Just wanted you to know that I'm rootin' for ya and I think about you from time to time :) *HUGS* 

Message Friend Invite

Jun. 2, 2008 at 3:02 AM Hugs and smooches to my luuuvly friend!!  I'm worried about you, wishing you germ-beating power and always love to see your posts:)

Message Friend Invite

Jun. 2, 2008 at 1:35 PM

Thanks girls.. Bells-  I sent you the recipe (but it's kind of confusing).  I was trying to explain ALL of it but I may have confused you.  Tell me if you'd prefer to cook on stove-top or in oven and I'll send you a better version (not so screwey).. ok?

Cass-  Yeah.  I try to put it out there and, for some reason, I still get the "healing" questions.  wt-eff?

Pam/  You are such a doll and I feel bad that I haven't been around much.. and I have missed any calls (I suck sometimes).  Anyway, the temp and the b/p are back up;  the head feels like the infection is growing yet again (feels like rubber-band snaps in my head and ear) so that sux.  I need a lot of rest but need to work.

And, hey-  Dawn (honey). I have been working on something for you and for your A and Z.. hah!  If I get around to it, I will be sending something your way.. so, please pm me with tee-sizes for you and A and Z... ok?

Message Friend Invite (Original Poster)

Jun. 2, 2008 at 6:12 PM btw;  Bells-  You crack me up with your change from Pepsi (devil juice) to coke!  My kids do NOT drink any Pepsi products and they don't allow ANY Pepsi- products in their homes, either.  Of course, they went through hell because of this crap-  they were only 2 and 4 when this happened (exactly 20 years ago today) so they had to grow up with a sick mom.  Still, Bells-  I love ya for doing that!

Message Friend Invite (Original Poster)

Jun. 9, 2008 at 9:50 PM

So...are you able to eat steak yet (said with strong tone of sarcasm)...sorry, I had to say it. Believe me, I know how you feel on this subject.  When I had a GI tube in for 9 months, I was unable to eat anything at all...strictly tube feedings. My favorite question was when when people asked me if I missed eating...DUH!!!  Would they miss their arm if it was amputated?  At the time, no one knew how long I was going to have the GI tube or if it would be permanent. At the time, I would have killed for a     But most people who ask are doing so out of concern....they just don't use tact when asking how you are.   Your surgery became a fairly popular subject on CM when you were raising the funds to go to that is why so many people are asking you questions.

 It is so awful you have had to endure so many setbacks after the surgery.  I've been going to ask you on the Chronic Pain group how you haven't posted an update in awhile (unless I missed it). Now I'm glad I didn't....or I would have been one of the people you were talking about in this

Message Friend Invite

Jun. 9, 2008 at 10:19 PM

little ole mel from this side of hell....just doing a quick fly by to see how it's hanging since i've not heard from you in a bit.

you know that i know just how bad this is and just how great you are never going to be. but you can handle this. i know you can. you also know where to find me should you need to 'chat' about all the stuff no one else wants to hear about. 

hang in there and i'm thinking about you as i always do............mel

Message Friend Invite

Want to leave a comment and join the discussion?

Sign up for CafeMom!

Already a member? Click here to log in